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What You Need to Know Before Giving Me Advice on Chronic Pain

7/24/2019

4 Comments

 
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(This article also appears on The Mighty)
How many times has someone assumed they know more about your chronic pain than you do? Countless?

I can’t tell you how often some random person has offered unsolicited advice before even finding out what my condition is, what I’ve already done, what I am doing now or even if I need or want their help.

Medical professionals and alternative healers I just met in a social setting have assured me they can make me pain-free if I will just come to their office for one session. Seriously? Then, it’s implied I don’t want to heal if I don’t hire them.

Sigh. Has this happened to you?

Thanks, But, No Thanks

Here’s some thoughts about what to say to these probably well-meaning, but misguided, people:

Thank you so much for caring. Truly.

I see you want to help me get better, and you may even be an expert in your area. Please respect and honor that I am also an expert — an expert in living with my specific condition and pain — and please respect my response if I already know what you have to offer won’t help me right now.

You probably don’t know that people take the opportunity to tell me how to get better all the time. And that puts me in the position of having to constantly say no, of having to justify not taking their advice or hiring all those healers who want to massage, balance or realign me or fill me full of some miracle supplement.

You see, when you sincerely offer your advice, I don’t want to just blow you off, which puts me in the position of feeling like I have to explain myself to you and I really don’t want to have to do that. It’s exhausting.

I have to tell you about all the things I’ve already done, how chronic pain is different, not straightforward and not easy to deal with. This puts me in the very strange and uncomfortable position of constantly having to defend the reason I’m still in pain, which you might hear as if I’m resisting healing (which isn’t the case). This is a really unpleasant feeling; it’s not one I enjoy.

Help That Is Not Helpful

Can you imagine? You’re walking around with a broken leg in a cast and people keep coming up to you, giving you advice on how to treat smelly feet or what to do for a hangnail. You have to keep explaining over and over again that a broken leg is much worse than that, it takes a lot longer to heal, that you’re already doing everything you know how to do, and, thanks very much, but that advice isn’t really applicable. Over and over and over and over and over...

Can you imagine how exhausting that is, especially if the person offering the hangnail treatment is insulted you aren’t as excited about it as they are?

As either helpful friends or healing professionals, when you start the conversation by telling me I shouldn’t be in pain (presumably because you’ve now turned up to make it all better), you’re making me wrong for still experiencing pain, and putting yourself in the position of savior.

I’m sure it’s entirely unintentional, but it’s an insult to my intelligence and my motivations and minimizes the incredible challenges I face every day, as well as the long road I’m walking, trying to actually come out the other side of pain permanently.

Being in pain is not where I want to be, I can assure you, and it is not a deficiency in my character. If I could be out of pain, I would. If any of us could be out of pain, we would. We are not resisting healing. We are in chronic pain. That’s the definition of the word. It won’t go away easily.

Please, Do This Instead

Here’s what I would most prefer you do when we meet:

1. If I haven’t sought you or your advice out, ask my permission to talk with me about my chronic pain. Please don’t start the conversation by asking me if I’ve tried XYZ, or telling me what I should be doing.

2. If I’m open to talking about it, find out what my specific condition is, how it affects me (don’t assume you know), how extensive it is, how long I’ve had it and what I’ve done already.

3. If you still feel you have something to offer, ask my permission to present whatever piece of advice or healing modality that may be. Please don’t be offended if I simply say, thanks, but no thanks.

4. Be honest. If you’ve helped other people with my specific challenge, great — I may want to hear about it. Don’t make wild claims about how you can heal me almost instantly when no one else has been able to in years.

5. Be gracious if, after hearing what you have to say, I decline to work with you or take your advice. Don’t assume it means I don’t want to heal. I’m sure you believe your method, supplement, diet or exercise is the right one, but so does everyone else. Pushing it on me makes me as uncomfortable as someone pushing their religious beliefs or their multi-level marketing program on me.

If I do decide to work with you or take your advice, know it will be one layer of a multilayered approach to healing. This means it is unlikely that one thing will completely heal my chronic condition. It’s a group effort. Don’t keep asking me if I’m all better now. And if I don’t improve, or if I get worse, let’s agree it’s not your fault, but it’s not mine either.

In summary, know I appreciate your caring, but please give me a break with all the advice. Don’t feel bad if I decline to call your favorite massage therapist or book a session with you as a healer. I’m already working full-time on healing as it is, and may have limited resources.

Thank you for your concern. Really. And the best advice I can give you in regard to offering your unsolicited services or advice?  Don’t. Just don’t. 
4 Comments
Kris
7/28/2019 06:15:54 am

Exactly!

Reply
Nick link
7/28/2019 07:24:20 am

It's a really hard social situation to fix, and I feel it all comes down to the fact they we do not know enough about "hidden" chronic illnesses.
Thanks for the post, it's made think about my parrot like advice when solutions have worked for me, but may not necessarily be well received in other situations.

Reply
Flo
10/24/2019 07:18:48 pm

Dear Sarah, thank you so much for this post. And thank you so much for your book, The Pain Companion. I picked it up after discarding another pain management book written for therapists (I'm a clinical psychology student who also live with a chronic pain condition) which was so condescending and clearly written by someone who doesn't have a clue. Your book spoke to me from the very beginning. Despite having read many chronic pain management books/scientific journals written by "experienced" experts or researchers, nothing was so helpful and practical right from the beginning. I love Part 2. As I read, I keep thinking wow, she is giving me the language to express how I feel. And at the same time, I love your antidotes, because I too, am a practical and proactive person. I am on Part 3 now, and I'm using some of your suggestions in my own meditation practice. It's so helpful. Thank you again, for writing this.

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